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Can someone help Please - Carers UK Forum

Can someone help Please

Share information, support and advice on all aspects of caring.
I have 3 children under the age of 10yrs old all with different disabilities I'm an epileptic and have severe sciatica and 3 prolasped dics and in constant pain.
My husband and I have no suport from anyone. we tried to get a social worker but got told our house was clean and tidy so we are coping and don't need help.
We had someone from care's suport come out to us July last year and only heard from her once since even though we have phoned several times for advice.
I'm on the waiting list for a full hysterectomy and removal of some of the bowel.
I have one of the children is on the Autistic spectrum and has ADHD (few other things as well) I need advice on her she is 6 yrs old from the time she gets up from school until she goes to bed she screams slams doors hits punches and kicks us smashes the furniture wets her bed (when she's awake) through temper, she wrecks the other two childrens bed rooms we have had to put little locks on the older two's bed rooms to stop her getting in to smash their things when they are not around but she has now kicked one of the doors and broke the lock. She justs screams and screams for 1/2/3 hours after she's put to bed. I'm at my wits end I am so tired and totaly washed out my husband is not a great help and tends to go out for a drive when it gets too tuff and i'm left on my own.
I never wanted her to go on medication for the ADHD but GP said she must so we tried it. It made her worse so I took here off it. I would refuss rest bite if it was ever offered.
But I don't know what to do PLEASE PLEASE HELP ADVISE

Sorry about spell mistakes and I'm sorry if I have made no sence here but I am so tired!!!
Bean, I don't know what to say. Your situation is totally unacceptable - but I'd guess that your daughter is "ok" at school? It sometimes happens that the structure in a school prevents a child with autism from melting down there but it all bottles up and all hell breaks loose at home.

You need expert help with this and I'm no expert. I'd ask your GP to refer you to the local Child and Adolescent Mental Health Service: they should be able to advise you and to help with behaviour modification.

I would, I'm afraid, also look at getting social services invovled urgently, especially as your daughter is becoming increasingly violent. Don't take no for an answer and - frankly - don't tidy up the house before they arrive. If any social worker comes out with the "house is tidy so you're coping" rubbish, they are thinking in terms of child protection and not disability. Tell them what your nights are like, be brutally honest about it all. And have a friend with you if you can to support you.
Hi Bean,

Like Charles says you need expert advice about this and quick.Your situation is urgent and needs addressed a.s.a.p and thats before you even think of when you go into hospital.

You need help and support,your hubby does and also your children will have their own needs.

I am putting a few links which may assist you in finding the appropiate help.

CarersLine 0808 808 7777

CarersLine is Carers UK's free advice line for carers. It is open on Wednesday and Thursday each week between 10am-12pm and 2pm-4pm. Telephone 0808 808 7777

http://www.carersuk.org/Information/Helpwithcaring

Have you considered contacting the National Autistic society too.

http://www.nas.org.uk/

Autism Helpline 0845 070 4004

These may be able to advise as to the best course of action about your daughter.

There is so much here to be considered and if you do contact Social Services you will need help and support,too much for one person to undertake.I will put a link at the end of this posting that will hopefully put you in contact with a local carers group.
Have you had a carers assessment done?
As a carer, you are entitled to a carer's assessment, which looks at your needs and how you, as a carer, can be supported.This is done by soc services.

This following link covers Surrey,if you click on the map the area where you live,the contact details of a local carers group should hopefully be given.Please consider contacting them as no doubt they will have members who will have similar experiences.

http://www.carersnet.org.uk/localsupport/carermap.html

I am sorry to have bombarded you with so much reading material but at times this is the way we learn.

In the mean time, keep posting when you can so we can offer you some support here too.Use us to offload any worries.We wont have all the answers but sometimes just knowing others are out there listening can help a great deal.

There is help out there Bean and hopefully we can help you find it.
Be firm when you ask for help,you have rights.

Be strong
Rosemary
Hello Bean, We've just recently got some help sorted out after years like you of trundeling along and 'managing'.

Go back to social services it's not about a tidy house, if you're under pressure and finding it difficult to cope spell it out to them.
Honestly it's the only way you get listened to!
The local Carer's Centre are good at speaking for you too, if you're finding it all a strain.
I hope this helps a little! Image
marie x
Whew! You already have your hands full, but......
Dont forget to ask for a full benefits review - you are almost certainly not getting your full entitlement, and money does help...you might be able to employ someone to help through direct payments or whatever.....money is very important.
Hi Bean i have a 13 yr old Autistic daughter ,can i ask what medication she is on ? is she on Ritalin ? go back to your daughters Paed and discuss the medication with them you may be able to try something different and this just didn't suit her what is her understanding level ?does she use PECs system my daughter is 13 but is till only around the 2yr old mark ,does she communicate well ,is she holding it together at school and then letting all the Anxiety out on you ?
Please go back to social services don't hold back,cry scream throw a tantrum anything ,make sure you get a carers assessment too i would think that is doubly important in your situation
for a long time my daughter was violent and still is on occasions ,i emptied her bedroom of everything apart from the bare essentials ,or you can do this with any room in the house (also see social services about a safe room with padding where she can go to let of steam ) try to get her into the habit of going there when she starts to feel anxious ,belive me i have sat and held the door on my daughter while she trashed her room there was nothing in there to hurt her and i opened the door to check ,now i can stand there door open and she knows she is not allowed out of her room till calm and she knows thats where she has to go to let off steam what works for one autistic child doesnt work for another and if she has ADHD as well how about an indoor trampoline to help let off any pent up energy or an excersise bike
and using these as a reward system also ,do you use a reward chart ? i am sorry i can be of more help but please do not hesitate to ask and i will help if i can
Deb x
So sorry I haven't replied sooner but had a few problems getting back into the site.
Christine thankyou for sorting it out for me.

I contacted Social Service's again and all they said was "We can't help as you have a husband to do everything" I explained it takes 2 people to get the the 3 children ready for school, but agin they have said "NO"
Finally carer's support contacted me and are coming out tomorrow so hopefully they can help us even if we get help for the first week i'll just have to recover quick!!

I was at the hospital yesterday they gave me a date for 30/05 for opp but I have had to cancel it due to up coming school Annul reveiw meeting 5th june and other meeting hospital visits with the children I need to get the children sorted out first befor I have it done, so they have sort of agreed to let me wait for Sept which gives me a few mths to sort everything out.

This is a night mare I feel like running away.
For 10 yrs we have never asked for help.

Thankyou everyone for advise and I am now going to spend some time going over what you have all writen and check it all out and let you know how it goes.

So sorry to have another moan

Take care x
Bean, it appears to me that your social services department may be acting illegally. They cannot simply turn round and say "your husband can do it" - if for no other reason that legally he has the right to say "no I can't/won't".

I'm glad you're getting a support worker - it looks like you'll need one.
Thankyou everyone
the woman from carers suport come out and is contacting Social services agin and a few other people she was not pleased at all.

I'm so greatful to you all for that bit of push I needed to contact people as I was ready to just give up on asking for help..

THANKYOU ALL SO MUCH!!!! Image